Tuesday, January 20, 2015

Discharged, revision #30-something. Feeling like crap

I did get released Sunday afternoon, I wasnt feeling any better or worse there than I could feel at home so there was no point in being there. My Sister had my neices 4th Bday Party Sun night and I have to say I just felt tired and not great so felt as if I was watching everything from the periphery. Kind of sucked (feeling so out of it) actually).
It has not been a greatly fantastic week though atleast I am home. I admit I feel kind of depressed at feeling like crap again and stinks that the stupid shunt had to fail when atleast we where having semi-decent results. Atleast I had felt like a human, headaches or not I could live w the way things where prior to last Mon. While I don't feel great I am trying to remain optimistic though that admittedly hasnt been easy as I wake up a 1/2 doz times or more a night (for whatever reason when I have shunt issues it affects my feeling like i have to pee alot at night). I have little motivation to do anything and yet have plenty I should do. I HATE THIS! ='/ Dr.Bragg has said to just call if I thought I needed to see her before next wk and i've been tempted but will probably just talk to her Secretary when they call w the f/up date. I don't want to need Dr.Bragg! I am pretty sure the shunt isnt going to sort itself out this time, atleast other times when it did i'd feel a little better each day and this time I just feel blah and aweful day after day after day.
Last week seems like a blur, especially Monday night to Weds after surgery. I really remember very little of the ER at BD, the ambulance ride to UW and I don't know that I remember anything really of the UW emergency room or being on the Gen Med floor at UW prior to the shunt revision Weds. I do know the hospital was full so that's why I was initially on a different floor and that the Nurses (apparently) specifically made it a point that I had a room back on the Neurosurg. floor following surgery Weds. I apparently had multiple conversations on fb with friends but don't remember these or anything I may have posted which is sooo weird!
As much as I feel like crap now (and I do, ugh it's aweful), reading evem this is near improssible (seems the stuff that is close up) I feel lucky that as much as I hate being in-pt these Nurses and staff have become like extended family and seem to really like me/want to make my stays a little better. As weird as it is I feel like some in the Neurosurg. floor/Team are more like family (in an extended kind of way) than are some of my own extended family.
Honestly it is a little depressing to feel worse now than I did prior to last Monday night when the shunt really failed. I may not have felt perfect up till Monday night last wk BUT I did feel more human and I felt atleast somewhat better, I felt like things where going fairly well for once! Honestly I feel like the hardest part of shunt issues atleast on a mental level is I feel like I am in a fog and like interaction with other people is much harder.
Hard to explain but I know i've talked about this before here. I don't feel like a very friendly person as it genuinely feels difficult to make small talk. At the same time i'm sure in conversations lasting just a couple mins. I just seem either unfriendly or probably aloof/rude or some people likely don't notice. I feel bad about and hate this and yet it's as if I am in a fog so I am aware of my change in personality but to tired to change it.
Today I just felt like there wasnt anything we where doing in-pt that I couldnt do on my own out-pt. Dr.Bragg when she stopped by before I got out commented something along the line if things didnt improve she wasn't giving up and if needed she felt we had options + we could fiddle more with the shunt function/placement or settings.
I did keep forgetting to ask her what settings the 2 shunts are at now post-last wks surgery so I am not sure if we have any room with settings. She to it seems is hoping due to the sudden and severe nature of this shunt failure that it will just take a few more days for my brain to calm down and settle back to a more normal.
As far as f/up i'll see her next wk (a week out from now) probably on that Thurs 1.5wks from now. If things would worsen or I needed she just said to call sooner. I kept wondering this week given the shunt failure was so sudden and so severe is the TPL Shunt working or working optimally? I guess this is something i'll have to ask Dr.Bragg if I don't feel better. Who knows but hopefully it (TPL Shunt) is!? =/
On a side note Dr.Bragg mentioned yesterday they are interviewing a new Neurosurgeon to join her and her Partner in their Peds Neurosurgery practice, it sounded like someone who has been in practice for some time. She was hoping this person would be open to trying new things and could perhaps help her - who knows but I am grateful she still seems to not be giving up. I think that will always be a fear of mine. I do just wish I could feel better though. =/
Will try to update soon, sorry this has been less than awesome,
Erica

Thursday, January 15, 2015

Sudden VP Shunt failure, Admitted to UW, surgery Weds.

Well i'll come back to it and update how the Hand Surgery went last Thurs. but first some other unexpected shunt issues began Monday might.
I'd been having slight increase in Headaches over I'd say the last week or maybe more BUT nothing that was so bad I thought 1 of the shunts would quit working. I still was somewhat optimistic this revision done in Nov. was the best I'd felt in a long while which believe me was nothing short of exciting!
Sunday I'd taught Sunday School, visited my parents a bit and went to a Church committee mtng Sunday evening followed by getting dinner w 3 of my Church friends, all feeling pretty fine minus the mild inconsistent but consistent headache that wasn't really new.
Monday was ERT (infusion) day which ran a lot longer than normal due to our continuing to try to figure out the best ramp up and final rates to run the drug over 5hrs. In total infusion ended up lasting 6hrs but I was still able to get home about 7:30(after leaving my Apt about 9-9:30. I think I put my PJ's on and sat on the couch probably watching TV or zoning out or something due to being tired! Pretty much out of nowhere around 8:30-9 I started getting a really bad headache that is one that just nothing I did would ease it. I think I gave up and laid down around 10 before getting u take Zofran and then a bit later a 1/2 a dose of Ativan followed by the other 1/2 not to long later.
I managed to sleep on and off a little but by the wee hours of the morning I was throwing up very frequently. I think I must have done that for about 4-5hrs on and off trying to stay warm (due to chills) and keep ibuprofen and adivan down (with pretty much no success but I kept praying I'd feel better by morning. Needles by around 7:30-8 I called my Dad and asked if he'd come pick me up and take me to the local ER in BD. I still wanted it just to be the flu or something even though I knew it was something shunt related in all reality.
At the ER between throwing up in their bathroom next to the registration desk the Nurse (former HS classmate ironically) I was taken back to the ER within a few mins, an IV started through the Port (as miserable as I felt I could have hugged the Nurse for being so open and willing to use the Port thus our not having to fight with terrible veins. Once that was placed they did fluids and more Ativan + I think a pain med and Zofran. Not to long after the doc peeked in, asked who my Neurosurgeon was so she could do whatever Dr.Bragg wanted or find out if she (Dr.Bragg) just wanted me to transferred to UW. In total although the morning is a complete blur I don't think I was at BDCH's ER for more than an hour or so. The Ambulance came, was transferred to UW and I have to admit I remember pretty much nothing of the rest of the day.
Once they tapped the VP Shunt we knew it wasn't working so Dr.Bragg went back and forth between doing emergency surgery that night (but having to manage to high of an INR) or waiting till Weds for surgery and giving multiple (3 I think) bags of Plasma to bring the blood thinner (INR) level to a safer range. Surgery I couldn't even quite tell you what time it was at but Dr.Bragg did say with their using the Lightascope (sp) went the best she's seen it go in a long while. For surgery if I remember what she told me even remotely close they exchanged out the old valve but used the same Codman (I am not sure and haven't thought to ask her of she opted to stick w this valve bc we've had reasonably good luck w it (clearly not the best but atleast I feel semi-human with it most of the time) or bc having been a unplanned surgery did she not have the newer valve she'd talked at the Appt about on hand.
She did tell my Parents after surgery they ordered and will keep on hand now an extra set of each of my shunts (VP Codman Hakim and LP Codman Hakim which they use in the Thoracic spine) to prevent the delay they had during this surgery.
She did say they had a problem w a tiny part of the shunt (a connector piece maybe, cant remember for sure) so they had to call their Codman Rep who was 1.5hrs away and have her bring a whole new shunt Codman Hakim shunt and in the mean time they just kept me asleep on the table + Dr.Bragg and her colleagues just kept watch while waiting in the OR room.
I think once they had the new shunt system they took off the piece they needed and where able to finish the shunt part changes. She didn't really say why she thought this occlusion would have happened so fast and so (for me) severely but commented that was the worst she'd seen me since 2 Christmases ago when I'd gotten released the afternoon prior to Christmas Eve day and then was brought back that same night also by ambulance. It definitely makes me wonder why some occlusions are so much worse than others, other than perhaps when I am able to go longer w headache and related symptoms the VP Shunt must be workin minimally whereas this time it was completely failed? Not sure but was TOTALLY unexpected! I was actually somewhat optimistic we'd make it longer, maybe even a few more months or something the way I'd been feeling the closest to normal I'd felt in a long time!
Non-the-less I am more than grateful my Dad could come pick me up Tues morning, that the local ER calls and works w Dr.Bragg to come up with a transfer plan without really a second guess or my having to ask them to.
I don't feel as good as I had after Nov's revision but am hoping maybe in a day or two I will. I am really grateful to Dr.Bragg and her Team, to my Family and friends for the huge outpouring of support and concern and that this surgery now to is done and over with!
As far as the Hand surgery that minus some mild disagreeing with the Anesthesiologist over whether the stress dose steroid needing to be given or not I think surgery went well. He didn't come talk to me after surgery so any info I have is whatever he told my Dad.(that always gets on my nerves when Surgeon don't bother to talk to the Patient and explain their thoughts or what they did).
He told Dad I guess the carpal tunnel was definitely severe again (the last release, done for a 2nd time was performed by Dr.D in Milw. about 5yrs ago). That was a pretty extensive release but this time was done even more so and along w the tendon thinning (I think that's what it is) Dr.Bliss did what is called a 'fat pad graft' where they take hypothenar fat (I guess) and use this to protect the newly released carpal tunnel area due to the other surgeries.
I was supposed to have the 1st f/up to get the splint changed on Tues but due to the ER and getting transferred to UW that appt was rescheduled to Thurs (today) but I again had to reschedule. Now i'll follow up next wk., they said if I got out to let them know and they'd fit me in early in the wk but given it's ONLY to change to a new splint and I go back to get stitches out (the splint stays on for a few more wks) on next Fri I may just see both the OT and the Hand Surgery P.A. on the same appt. We'll see.
Right now I am just hoping the headaches improve some more and I get back to feeling closer to prior to this VP Shunt fail/occlusion!
Will update again soon,
Erica

P.S on a more positive note the Foundation I work part time for asked if I'd like to go to the WORLD Lysosomal mtng mid-Febr again (this yr in Orlando) so my plane ticket, hotel, etc. are all booked and planned! It is a good mtng with a lot of info on not only MPS but the related disorders and most if the drsa patient might want to talk to all under rook!